BENEFITING: THE UMASS MEMORIAL FOUNDATION INC
ORGANIZER: THE UMASS MEMORIAL FOUNDATION INC
EVENT: 2015 Boston Marathon
[Special thanks to these corporate donors: St. Peter's ALS Regional Center $500; JCB Specialties, Inc. $100; Watervliet Police Benevolent Association $200; Albany Fire Protection, Inc. $100; Cohoes Police Officer's Union $250]
UPDATE: Sadly, my father-in-law lost his battle with ALS on Friday evening. I will continue on with the run in his honor and memory, and he will be watching from the best seat in the house. My original post is below.
I am running the Boston Marathon IN HONOR of my father-in-law, Gene Kendrick, who was diagnosed with ALS in October 2013. His disease has progressed very quickly, and we are desperate for a cure to be found just as quickly. Dad is a Vietnam veteran with a wonderful wife, four children and seven grandchildren, and hundreds of loving family members and friends. Together, we call ourselves "Gene's Army." It is believed his ALS (like many other patients) is related to his service in Vietnam ... just another way heros sacrifice for our country. I WILL RUN BECAUSE HE CAN'T WALK. WHEN TRAINING HURTS, I WILL THINK OF HIS PAIN AND PUSH HARDER. I WILL FINISH THE RACE AND PUT MY MEDAL AROUND HIS NECK. This horrific and incurable disease is devastating to the patient and the entire support system. I have pledged to raise $8500 for this important ALS research organization. I hope you can help support my goal. Truly, ANY AMOUNT is heartily appreciated.
As a recreational runner and Boston University graduate who used to watch these races and dream, I still can't believe this is happening. And to do it for Gene and others just like him, I couldn't be more proud or honored to have been chosen.
THE UMASS MEMORIAL FOUNDATION INC wrote -
THE CELLUCCI FUND
In recognition of the critical need for new treatments for ALS, amyotrophic lateral sclerosis or Lou Gehrig’s Disease, the UMass ALS Cellucci Fund—formerly known as the UMass ALS Champion Fund—is a movement to drive awareness and funding for the ALS breakthroughs happening at UMass Medical School (UMMS) and in the laboratory of Robert H. Brown, Jr., DPhil, MD, one of the world’s leading and most promising ALS researchers.
The Cellucci Fund aims to help Dr. Brown and his colleagues pursue ALS research leads and breakthroughs right now that might otherwise take years to attract funding from traditional sources. As a result, this Fund will make researchers at UMMS better prepared to “seize the moment” when highly promising ALS discoveries are made.
In 2011, UMMS and Dr. Brown were joined in this effort by former Governor of Massachusetts and Ambassador to Canada, A. Paul Cellucci. Governor Cellucci announced that January that he had been diagnosed with ALS and was being treated at UMMS by Dr. Brown. News of Cellucci’s diagnosis sparked an outpouring of support from friends and colleagues across the Commonwealth and the country, including fellow former governors and other elected officials. Governor Cellucci chose to use his story as a catalyst to support ALS research at Massachusetts’ public Medical School through the establishment of the UMass ALS Champion Fund, now the Cellucci Fund.
“I am proud to continue my career in public service by leading the UMass ALS Champion Fund,” Cellucci said in at the time. “A champion helps to deliver great victories, and Dr. Brown is a true champion of ALS research. But, victories are a team effort. Dr. Brown and his colleagues at UMass Medical School need our support.” Cellucci died from complications of the disease on June 8, 2013. He was 65. In 2014, the fund was renamed the UMass ALS Cellucci Fund to honor his commitment to this cause.
Dr. Brown, the Leo P. and Theresa M. LaChance Chair in Medical Research and chair of the Department of Neurology at UMass Medical School and UMass Memorial Medical Center, is widely recognized as a pioneer in neurodegenerative disease research and for more than 30 years has dedicated his career to unlocking the secrets of ALS, a degenerative disorder that causes progressive muscle weakness, leading to paralysis and eventually death. There is currently no treatment to stop or reverse ALS. Dr. Brown has been a leading visionary for ALS treatment and part of nearly every fundamental ALS breakthrough to-date, including the identification of mutations in a gene that is responsible for the rare, familial form of the disease. Dr. Brown’s work has opened a window into ALS that has drastically changed the research landscape and provided patients and loved ones touched by ALS with something very rare: hope.
The Cellucci Fund aims to extend and supplement the already great fundraising initiatives benefiting UMMS. Dr. Brown and team has been fortunate to receive support from a diversity of groups, including the Massachusetts-based Angel Fund and national partner CVS Pharmacy, both of which have been raising money for UMMS and acting as champions in the fight against ALS for more than 10 years. The Cellucci Fund will complement and extend those funding sources to augment the overall effort..
Now is the time. There is hope. But, victories are a team effort. Join us in the fight back against ALS.
DR. BROWN vs ALS
Robert H. Brown Jr., DPhil, MD, the Leo P. and Theresa M. LaChance Chair in Medical Research and chair of the Department of Neurology at the University of Massachusetts Medical School (UMMS) and UMass Memorial Medical Center, is an internationally known researcher and physician leading the quest to cure neurodegenerative and neuromuscular diseases like amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
Renowned for his groundbreaking basic and clinical research on the inherited and genetic basis of neurodegenerative and neuromuscular diseases, Dr. Brown has a record of significant discoveries in identifying gene defects that elucidate how ALS causes neurons to die. In 1993, a team of researchers led by Dr. Brown discovered the first gene linked to the inherited form of ALS, called SOD1.
Each year, it is estimated that 5,000 people in the United States are newly diagnosed with ALS, a progressive, neurodegenerative disorder affecting the motor neurons in the central nervous system. As motor neurons die, the brain’s ability to send signals to the body’s muscles is compromised, leading to the loss of voluntary muscle movement, paralysis and eventually death from respiratory failure. The average survival rate for patients with ALS is three to five years.
ALS is a fundamentally untreatable disease, and its cause is still not entirely understood. About 10 percent of ALS cases arise because of inherited genetic defects. The cause of the remaining 90 percent of cases, known as sporadic ALS, is still unknown. One hypothesis is that in these cases, the disease is triggered by a combination of genetic susceptibility and exposure to one or more adverse environmental factors. For example, there is growing evidence that head trauma may predispose patients to ALS and related cognitive decline.
Development of new therapeutics to treat ALS depends on better understanding how the disease works. In October 2010, Brown and his team at the University of Massachusetts Medical School reported evidence suggesting that the SOD1 gene, which is implicated in 20 percent of inherited cases of familial ALS, also plays a part in the more common, sporadic forms of the disease. Brown’s research showed that under certain conditions and absent a mutation in the gene, a normal SOD1 protein can have the same toxic characteristics that are found in mutated forms of the gene. In select cases of sporadic ALS, these toxic proteins are present.
When he began researching ALS over 20 years ago, Brown believed that one day his work to identify the genes implicated in the inherited form of ALS would yield new insights into the more common, sporadic form of the disease. These findings are the first evidence that genes implicated in inherited ALS also play a role in the sporadic form of the disease.
Dr. Brown joined the University of Massachusetts Medical School as chair of neurology in May 2008, in part, because of the work of its internationally known scientists unraveling the mechanisms that turn genes on and off. UMMS is home to some of the world’s leading researchers in the field of RNA biology (RNA interference or “RNAi,” is a gene-silencing mechanism for which UMMS Professor Craig C. Mello shared the Nobel Prize in Physiology or Medicine in 2006), which Dr. Brown believes holds immense potential as a therapeutic for neurodegenerative diseases such as ALS, with its ability to create and regulate the complex patterns of gene expression. Initiated by Dr. Brown, an ALS-related arm of these efforts includes a program to silence the activity of mutant ALS genes that make the toxic proteins that trigger the disease. Working in conjunction with researchers at the Gene Therapy Center at UMMS, Dr. Brown is accelerating efforts to devise novel gene therapies that can access the brain and spinal cord for diseases such as ALS.
Shortly after joining UMMS, Brown and his colleagues identified a new genetic mutation linked to ALS which is estimated to account for 5 to 10 percent of inherited cases. Discovery of this mutation, called FUS/TLS, was named one of the most cited papers from 2008 to 2010 by Thomson Reuters. Though it’s still not clear how the FUS/TLS mutation causes ALS, scientists know that the FUS/TLS protein plays a number of roles in the neuron cell. In healthy neuron cells, the FUS/TLS protein is located predominately in the cell nucleus. Samples from patients with the FUS/TLS mutation show a concentration of the FUS/TLS protein in the cytoplasm of the cell, however, outside of the nucleus. This misplaced protein is believed to contribute to cell death in neurons.
Brown has also identified disease genes in other inherited neurodegenerative and neuromuscular diseases such as hyperkalemic periodic paralysis, Miyoshi muscular dystrophy and hereditary sensory neuropathy.
Dr. Brown and his team have been very fortunate to receive support from a diversity of groups, including the locally-based organization, Angel Fund, and national partner, CVS Pharmacy, both of which have been raising money for ALS research for more than 10 years.
Outside of the lab, Dr. Brown is known as a compassionate clinician and physician, caring for patients suffering from neurodegenerative diseases. He is well known for his work with patient advocacy groups and charitable organizations, such as Project ALS and the ALS Therapy. He is also a founding member of the Northeast ALS Study Consortium and is president of the ALS Therapy Alliance’s Board of Directors.
Dr. Brown has received many honors for his extraordinary commitment to finding cures for neuromuscular diseases, including induction into the Institute of Medicine. He was also the recipient of the National A.L.S. Foundation Fellowship from 1980 to 1982, Plenary Lecturer at the American Academy of Neurology in 2002 and 2007, and is a member of the American Neurological Association. In 2011 he was named a member of the Association of American Physicians (AAP).
Dr. Brown graduated from Amherst College with a degree in biophysics in 1969. He went on to complete a doctorate of philosophy in neurophysiology at Oxford University and received his medical degree from Harvard Medical School in 1975. Following medical school, Dr. Brown completed his internship in internal medicine at Peter Brent Brigham Hospital and his residence in neurology at Massachusetts General Hospital. In 1983, Dr. Brown completed a research fellowship in neuroscience at Children’s Hospital in Boston.
In 1975, Brown joined Harvard Medical School as a clinical fellow and rose to the rank of professor of neurology in 1998, while also serving as Director of the Day Neuromuscular Laboratory and of the Muscular Dystrophy Association Clinic. Internationally recognized for its research and clinical care programs, Brown founded the Day Neuromuscular Laboratory in 1984 to investigate neuromuscular diseases. Dr. Brown continues his work with the Day Neuromuscular Laboratory today at the University of Massachusetts Medical School.